Parkinson’s disease affects more than one million Americans. This brain disorder interferes with muscle control, leading to trembling, stiffness, and inflexibility of the arms, legs, neck, and trunk; slowing or freezing of movement; and disruptions in balance, which can lead to harmful falls. These changes can greatly limit the ability of Parkinson’s patients to carry out everyday activities and compromise their quality of life.

Posted by Brigham and Women's Hospital October 2, 2013

Hydrocephalus is characterized by walking difficulty, trouble with bladder control, and dementia.

After college, raising a family, and building a successful business, Susan and Rick Sontag were living normal lives until things took an unexpected turn. One morning in 1994, Susan awoke with a serious headache. She was confused and unable to remember simple things. After a series of tests, Susan was diagnosed with terminal brain cancer. In an attempt to save her life, Susan underwent an experimental treatment. Miraculously, she survived. As a result of their experience, Susan and Rick started The Sontag Foundation, which has given over $40 million to support brain tumor research and other worthy causes.

But Susan’s miraculous victory appeared to have come at a high personal cost. Over the years following her treatment, she developed increasing difficulty walking and eventually required the use of canes and wheelchairs. Although she lost much of her short-term memory at the time the brain tumor was discovered, her family, friends, and doctors noticed a continuing decline in her other cognitive skills. Everyone assumed that her symptoms were side-effects of her brain tumor treatment and that nothing more could be done.

That was until a January 2013 scientific retreat, sponsored by The Sontag Foundation. Rick and Susan sat next to Dr. Mark Johnson, a Brigham and Women’s Hospital brain tumor neurosurgeon and scientist whose research had been supported by the Sontag Foundation nearly ten years earlier. Dr. Johnson too had observed Susan’s slow decline over the years; however, at the scientific retreat she seemed more affected than ever. Dr. Johnson recognized a pattern in her symptoms and asked Rick if she had ever been screened for a common but little known disorder called normal pressure hydrocephalus (NPH). She had not.